It’s common for parents to fret about young children who refuse food. But Cathy Reidy just knew she was dealing with more than routine pickiness with her second child. “He basically stopped eating and had no interest in food. We were struggling to get him to eat anything,” recalls the Cincinnati mother.

Young Adam even refused kids’ favorite foods. At his 2-year-old wellness check-up, she told the pediatrician: “I can’t get him to eat French fries, I can’t get him chicken nuggets, I just can’t get him to eat”. As if to prove the problem, Adam threw up all over the doctor.

Food issues weren’t new; at six months, the boy had been diagnosed with the food allergies to milk and eggs. But avoiding those two big allergens still didn’t resolve the eating troubles. Now old enough to talk, Adam would lie on the floor and complain that his tummy hurt. “Something just wasn’t right,” says Reidy.

The pediatrician got busy researching his symptoms, and was soon wondering if this could be eosinophilic esophagitis (or EoE for short), a chronic condition where the esophagus can become badly swollen. She referred the family to a gastroenterologist so Adam could have an endoscopy, an examination in which a tube with a camera is placed down the throat, allowing the doctor to take a look.

While inflammation may be seen during this “scope”, several tissue biopsies are also taken and examined for increased levels of one specific culprit – the eosinophil. This type of white blood cell is not supposed to be in the esophagus, but it can infiltrate, leading to chronic inflammation, tissue damage and the eating and health issues that Adam was experiencing. Sure enough, he had elevated eosinophil levels, confirming the disease.

Those dealing with food allergies are familiar with elimination diets, but Adam had to be taken back to an elemental formula diet, which provides essential amino acids but no potentially allergenic proteins. In other words, he was taken off solid food. Then slowly some solids were reintroduced. Ask Reidy what foods her son, now 8 years old, must avoid eating – and she pauses. It’s far easier to say what he can have. It’s about 20 foods, including meats, rice, potatoes, carrots, grapes, strawberries, corn, wheat and soy. She’s proud of those last ones: two top allergens are back in his diet.

Signs of Trouble

Eosinophilic esophagitis is the most common of a group of diseases known as the eosinophilic gastrointestinal disorders or EGIDs. The eosinophil cells are found in the blood and certain tissues, and are designed to defend the body against parasites, viruses and some bacteria. But they also play a role in allergic reactions, and when increased numbers of them appear in the esophagus (which is EoE), stomach, small or large intestine, or in the bloodstream or a specific organ, that’s a problem and one of these disorders.

Of eosinophilic esophagitis, Dr. Marc Rothenberg says: “It’s not a new disease, but it’s a recently recognized disorder.” Rothenberg is the director of the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children’s Hospital, which was the first clinic to focus on EoE in the United States. He and his colleagues saw their initial EoE patient in 1999 and thousands have followed. They and a handful of other medical clinics soon became immersed in discovering more about this emerging condition.

The estimates are that EoE affects between one in 1,000 and one in 4,000 of the population. In children, the symptoms are usually in the upper gastrointestinal tract, and include abdominal pain, vomiting, failure to thrive or the inability to grow.

It’s more common in boys than girls, and is not only a pediatric condition; EoE can develop at any age. Rothenberg, who is an immunologist and molecular biologist, notes that the symptoms in teens and adults are slightly different. A major symptom post-childhood is food getting stuck in the throat – known as food impaction. Other signs are trouble swallowing and heartburn or chest pain.

Young or old, one of the issues with identifying EoE is that the symptoms can be confused with other conditions. Of course, unless you get to the biopsy stage and a specialist sees those elevated eosinophils, you won’t know you have this disease.